Shopping online is very convenient, avoids the crowds and can sometime be cheaper. Many of us order food, clothes, household items, holidays or business supplies online and there are thousands of online stores to choose from.
Over 6,000 major retailers will give from 0.5% – 10% of the amount you spend, to Easy Fundraising, who will then pass it on to the charity of your choice. Shop through a browser or the app.
If you are already signed up to Easy Fundraising, you can refer a friend until the end of June 2022. Earn a £5 bonus donation for your cause every time someone successfully joins and raises £5 as a supporter through your personal link.
Amazon smile
Shop through Amazon’s charitable website and they will give 0.5% of the net purchase price to the charity of your choice. Support WAMES
But, I’m broke!
Even if you can’t shop online yourself you can ask friends and family to support you and WAMES by signing up to online shopping.
OR
Join us as an online fundraising volunteer and help others raise funds for WAMES! Contact Sharon for a chat.
Our income has dwindled, so we won’t be able to pay our basic bills after this year.
We are not the only charity to be facing problems. A number have been forced to close in recent years. Our fund raising journey is not of our choosing but it is vital if we wish to stay active and avoid a similar fate.
There are many ME organisations in the UK, all with different strengths and priorities. None do what WAMES does. We are the only charity where Welsh residents come together to share information and speak out for the services we need.
Why £800?
Our budget for ‘running costs’ in 2023 is:
Website £400
Insurance £300
Admin £100 Total: £800
If face to face meetings return in 2023 then we will need to find further funding for transport and accommodation, to enable us to represent people with ME.
We will also need additional funding to build a new website, and we will explore all options for this.
How?
Asking people for money at a time of rising prices is not ideal. (A bit of an understatement!) That is why we invite you to join us during 2022. Maybe YOUhave the skills we need to help us explore all the different ways that we can raise money which are free, low energy, inspire friends and family to join us or will attract outside funding. You could sign up as a volunteer, send us some ideas or organise your own fundraising action. Join us on our fundraising journey!
A few days ago the WAMES Facebook page just disappeared!
Our volunteer Jacob spent the weekend setting up a new page and over the next month we will be learning how to use it.
Some of the functions won’t be available immediately e.g. the user name is missing (@wamesmecfs). Please help us share the new location with past and new followers. https://www.facebook.com/WAMES-105437788854575/
All the messages and contacts we have made over the last few years have also disappeared, so we won’t be able to contact you until you get in touch again.
We’re looking on the bright side – this is a new start, with increased features and functions (eventually)! We will continue to provide helpful information for the Welsh ME community – and anyone else who is interested. Please let us know if there is any way we can improve our use of Facebook, or if you can help supply us with relevant up-to-date information. Contact jan@wames.org.uk
Women’s Health Wales Quality Statement calls for improved care for women with ME
On Saturday 28th May, International Day of Action for Women’s Health, a report has been published by a coalition of charities and health organisations, which discusses how women in Wales have poorer health outcomes than men and urgent action is needed to ensure they receive equal care and treatment.
For the past year WAMES have been working as part of the #WomensHealthWales Coalition, made up of over 60 charities, patient representatives, clinicians, and professional bodies to draw up a plan to help end health inequalities experienced by women, girls, and those assigned female at birth.
ME affects more women than men, in an approximate ratio of 4:1
(MERUK)
Scottish Government has a plan, UK Government has consulted on a plan for England, and now, Welsh Government has committed to drafting a plan for Wales.
Health inequalities are rife in Wales. Welsh Government’s plan needs to be ambitious in its aims to end systemic sex and gender health inequalities in Wales and it needs to be co-produced by both Coalition members, patients, and public.
What is the report about?
The Women’s Health Wales report is a collaborative, co-produced report that outlines 26 areas of healthcare where women, girls, and those assigned female at birth are disproportionately impacted. It includes a range of physical and mental health conditions and issues which might affect this population at different points in their lives and makes a series of recommendations we wish to see implemented to improve their health, lives, and wellbeing – both now and for future generations.
Recommendations for Myalgic Encephalomyelitis (ME)
The Report outlines the key issues which lead to difficulties for patients in accessing appropriate services in Wales and gives recommendations for ways the Welsh Government can contribute to the improvement in ME/CFS healthcare (p97-100):
~ Implement NICE guidance, removing GET and CBT
Ensure healthcare professionals are following the updated NICE guidance removing GET and CBT as treatments in rehabilitation clinics which include people with ME. Many patients with ME are also referred to the National Exercise Referral Scheme (NERS), but the lack of expertise or monitoring constitutes unsafe practice and has historically proven harmful to those with confirmed ME.
~All healthcare professionals should understand ME and PEM
Develop cross-team understanding of the nature and impact of people’s illness and ensure they are aware of the specific characteristics of ME so to provide appropriate patient-centred care. This includes a better understanding of ME’s main characteristic, which is post-exertional malaise.
~Develop medical pathways with the help of all stakeholders
Work with patient advocates, specialist groups, and clinicians to develop straightforward medical pathways for ME patients across Wales which should
include:
Sufficiently trained GPs to identify specific characteristics of ME and
diagnose
Occupational therapy for day-to-day management
Trained community nurses who can provide care and monitoring for those
who are housebound due to severity of condition or relapse
Access to additional specialist expertise wherever it is located
~Training for diagnosis
Increase training for GPs to diagnose and manage the condition. A 2016 patient survey found that over 60% had waited a year or more for a diagnosis.
~Good quality information for patients
Patients must be empowered to make informed decisions about approaches to symptom management and able to work in partnerships with their healthcare
professionals to co-design treatment plans/pathways which suit their individual
needs and experiences as part of a commitment to shared decision making.
~Support development of management plans
Urge service providers to provide support for healthcare professionals to implement
the NICE guideline’s recommendation of developing individualised energy management plans, which take account of the need for both rest & maintaining
physical condition.
~Medical training
Ensure co-produced training is delivered both to medical students and existing healthcare professionals.
~All-Wales commitment to recording diagnoses
Oversee an all-Wales commitment to ensuring GPs accurately diagnose and record incidence of ME using SNOMED system which enables health boards and service providers across Wales to understand prevalence and commission/ design services accordingly. Data collection should also include patients who have received private diagnosis or one from ‘out of area’.
~Provide guidance about equality issues
Clearer messaging and guidance about the Equality Act 2010 and associated rights and support, including provision of independent advocacy as referenced in the Social Services and Wellbeing Act Wales 2014, part 9278 and reasonable adjustments in the workplace.
The findings of this report highlight that there has been a long-term disconnect between the treatment deserved by people with ME and what they experience in reality.
“We view these recommendations as a starting point on which to build creative strategies across the governments of the UK, service providers and research institutions for the transformation of our society’s approach to ME.
Furthermore, we wish to see the UK take a pioneering stance towards ME research and a compassionate attitude towards people with ME at a time when we are seeing an increasing trend in the development of ME-like symptoms as a result of COVID-19.”
“People with ME require major cultural and policy change to take place within all professions associated with their care and support.”
The 20 recommendations in this report should be considered the starting position for Government policy. Summary of Recommendations:
Executive summary
The UK and Devolved Governments must each conduct a comprehensive review of current ME service provision with a view to implementing the new NICE ME guideline recommendations in full and creating strategies to transform the approach towards ME in health, welfare, social care, research and education.
Biomedical research and research funding
2. Coordinated research strategies must be developed to encourage high quality ME research.
3. Government research bodies should ensure that there is a parity of biomedical funding between ME and other serious long-term conditions.
4. Centres of ME research excellence should be established to drive forward the development of effective treatments.
Diagnosis, symptom management and services
5. Health professionals should follow the new NICE guideline for ME and ensure that ME patients do not undergo any form of GET.
6. Updated ME medical training should be provided by the Royal Colleges and medical schools to relevant health professionals and students.
7. Health service commissioners should review the adequacy of current ME services and take steps to ensure that service provision is carefully planned, resourced, and implemented.
8. People with severe and very severe ME should be provided with a care package based on the basic care principles detailed in the new NICE guideline.
Children and young people with ME
9. Health commissioners should ensure that all children and adolescents with ME have access to correctly trained hospital paediatricians and long-term community services.
10. The Royal College of Paediatrics and Child Health (RCPCH) should ensure that all paediatricians receive specialised training on recognising, diagnosing and managing ME in children and adolescents.
11. An independent second medical opinion obtained by a parent or guardian of a child with suspected or confirmed ME should be fairly considered in any decisions regarding diagnosis, treatment or welfare.
12. The Chief Social Worker (or equivalent in the devolved nations) should ensure that the guide for social workers working with children and young people with ME or suspected ME (developed by social workers in partnership with Action for M.E.) is shared with all social care departments.
13. Children and young people with ME should have a care plan, in accordance with national guidelines and/or statutory requirements, combining education and health.
14. Schools, colleges and higher education institutions should make learning and assessment modifications for students with ME.
Welfare and health insurance-based benefits
15. The Department for Work and Pensions (DWP) should ensure that people with ME have equitable access to welfare benefits by taking steps to (1) account for the impact of ME on the ability to engage with the application process and (2) minimise potential negative health effects associated with medical assessments.
16. Health insurers should not require people with ME to undertake GET, CBT or health assessments that require levels of activity which could produce adverse health effects.
COVID-19 and the ME community
17. Long-term health planning should consider the high number of individuals experiencing long COVID following a COVID-19 infection.
18. Health service commissioners should ensure that there is cooperation between ME and long COVID clinics to maximise patient benefit.
19. Long COVID research projects should include ME patients as a comparative group.
20. Further publicly funded biomedical and clinical research should be commissioned to investigate and compare a range of post-viral conditions, including ME
WAMES has been asking Health Boards in Wales what plans they have to implement NICE guidelines, whether they intend to consult with patients and how they think their long COVID service might benefit people with ME.
Claire Jones, the Betsi Cadwaladr Health Board’s Long COVID Service lead tells WAMES how they are planning to extend the Long COVID service to provide improved care for ME in north Wales:
“I can confirm that we are currently in discussions both within BCUHB and with partners and leaders from across NHS Wales as a whole. These discussions are looking to develop a service model which will enable BCUHB to increase the capacity and range of support available to people with ME/CFS whilst also preserving the critically important elements of the existing service such as specialist assessment, diagnosis and individually tailored support.
Our intention is to ensure that going forward people with ME across North Wales will be able to access the full range of support/intervention identified in the new NICE guidance such as domiciliary visits, services with close links into social care support, Occupational therapy support; all of which are currently unavailable in the existing BCUHB ME/CFS service.
As you quite rightly say there is significant overlap between ME/CFS and Long COVID and we echo your sentiment that there is a real opportunity here to develop services and expand this model to others who have similar symptoms/conditions.
We are passionate about co-design and co-evaluation of services. We work closely with our Long COVID Lived Experience Group who supported the co-design of the Long COVID Pathway here in BCUHB and who continue to provide valuable feedback and perspective to us as clinicians. We think it is important and would be very helpful to bring in ME/CFS lived experience representation as we progress our service model. [We will] contact you again to discuss this further as the plans for this model move forwards.
BCUHB Long Covid service
For context, it might be helpful to first provide a little bit of background to what BCUHB is currently offering for Long COVID – our multidisciplinary team provides full biopsychosocial assessment, referral to appropriate diagnostics and secondary care services as indicated and an individualised plan for management of symptoms and support for adapting to life with a long term condition. The support for symptom management which we provide uses the energy envelope approach and tools such as activity diaries. We provide in-depth support for the use of these tools. PEM/PESE is very common among people with Long COVID so this is an issue which we spend a lot of time supporting people to develop their understanding of and finding ways to work with.
The Long COVID service is delivered across the whole of North Wales in community venues with the aim of providing support as close to home as possible. The service to date has received positive feedback particularly in relation to patients telling us they feel supported, listened to and their symptoms are validated.
We recognise that while Long COVID is seen as a ‘new’ condition in that it has come about as a result of COVID-19, post viral illnesses in the wider context are not new. All patients, regardless of diagnosis/cause of symptoms should be managed on an individual basis, taking into account what matters most to the individual and tailoring support and interventions appropriately. Like you, we see Long COVID as an opportunity to highlight the requirement for services to support post-viral illness in a wider context.”
WAMES would like to hear from people with ME/CFS in the Betsi Cadwaladr UHB area about the services they have been receiving since the revised NICE guideline was published in October 2021, so we can continue to work for service improvement.#ImplementNICEmecfs Contact: jan@wames.org.uk
WAMES has been asking Health Boards in Wales what plans they have to implement NICE guidelines, whether they intend to consult with patients and how they think their long COVID service might benefit people with ME.
ABUHB’s Interim Chief Executive Glyn Jones shares their plans for improved care for ME with WAMES:
“Thank you for your email and questions about our plans for pathways for people with ME/CFS, particularly in light of the NICE Guidance and learning from Long Covid. I would like to assure you that I understand and share your hope that these lead to service improvements for people with ME/CFS.
We are planning a process of engagement across the Health Board, reviewing our existing services and conducting a gap analysis. We will establish a NICE implementation group to develop a shared pathway which will report to our Clinical Standards and Effectiveness Group. The proposed timescale is to begin dissemination of the NICE Guidance in July 2022 with the Implementation Group meeting in the autumn.
Aneurin Bevan University Health Board covers the areas of Blaenau Gwent, Caerphilly, Monmouthshire, Newport, Torfaen and South Powys. [ABUHB]
I would like to reassure you that our specialist staff take the issue of energy management and symptom exacerbation very seriously. A common difficulty is people pushing themselves too hard, trying to force their recovery and causing increased fatigue and setbacks. Our Post COVID Recovery Team for example, is careful to offer individualised interventions with a bespoke plan for each patient to help them to live as well as possible within the very real limits caused by their condition. Part of our larger project will be sharing best evidence based practice in chronic fatigue across the Health Board.
We have ambitious aims to improve pathways from accurate diagnosis, through to rehabilitation and access to in and out of work benefits.
I trust this information is of assistance. Kind regards
Glyn Jones, Prif Weithredwr Dros Dro/ Interim Chief Executive
Bwrdd Iechyd Aneurin Bevan Pencadlys/ Aneurin Bevan University Health Board
ABUHB operates across Blaenau Gwent, Caerphilly, Newport, Torfaen, South Powys and Monmouthshire. [ABUHB]
“The Health Board places a strong commitment on listening to and acting on the views of citizens in Gwent…. Find out more from our Engagement Team Tel: 01633 431890 Email: engagement.abb@wales.nhs.uk”
WAMES would like to hear from anyone with ME/CFS living in the ABUHB area about the service they have received since the publication of the revised ME/CFS NICE guideline in October 2021, so we can continue to work towards improving those services. #ImplementNICEmecfs Contactjan@wames.org.uk
NICE outlines steps needed to put ME/CFS guideline into practice
NICE has today, International ME Awareness Day (Thursday, 12 May 2022) published its implementation statement which sets out the practical steps needed to put its recent guideline on the diagnosis and management of myalgic encephalomyelitis (or encephalopathy)/ chronic fatigue syndrome (ME/CFS) into practice.
12 May 2022
The NICE guideline on ME/CFS was published in October 2021 and covers every aspect of the condition in children, young people and adults from its identification and assessment before and after diagnosis to its management, monitoring and review. It also highlights what support should be offered to people with suspected or diagnosed ME/CFS and their families and carers, and what information, education and support should be available for health and social care professionals.
Many of the recommendations in the guideline represent a change to current practice and will, due to the nature of those changes, take the NHS, education, social care and integrated care systems some time to implement. The NICE implementation statement highlights the areas that will have the most need to be considered by local commissioners and providers to comply with the recommendations in the guideline. These include:
Commissioners should ensure the availability of experts in secondary care to provide guidance to primary care
Providers and other organisations should update their training for health and social care staff (including those in training) to ensure that up-to-date recommendations and safeguarding implications are disseminated across the health and social care system.
Commissioners and providers should ensure that provision for increased access to early paediatric review for further assessment and investigation for ME/CFS is available where need is identified.
Commissioners and providers should be aware that investment will be needed to increase the number of specialist clinics and specialists with expertise to formally diagnose ME/CFS and develop a care and support plan where need is identified.
Commissioners should review funding and capacity in primary care, ME/CFS specialist clinics and paediatric clinics to enable the recommended appointments where need is identified.
Paul Chrisp, director of the Centre for Guidelines at NICE, said:
“Our guideline on ME/CFS provides clear support for people living with ME/CFS, their families and carers, and for clinicians. It uses the best available evidence as well as the lived experience of people with ME/CFS to address and resolve the continuing debate about the best approach to treating people living with this debilitating condition.
“With no nationally commissioned service for ME/CFS in either primary or secondary care, it will be for local systems to determine how to structure their services to achieve the aims of the guideline. Today’s implementation statement will build upon the widespread support from system partners and the ME/CFS community for the guideline and enable them to work together to make sure its important recommendations are implemented.”
Read the NICE implementation statement for ME/CFS here
Ingrid Torjesen in The BMJ says the NICE implementation statement is ‘unprecedented’.
“Such statements are only issued when a guideline is expected to have a “substantial” impact on NHS resources, and this is thought to be the first. It outlines the additional infrastructure and training that will be needed in both secondary and primary care to ensure that the updated ME/CFS guideline, published in October 2021, can be implemented. The statement is necessary because the 2021 guideline completely reversed the original 2007 guideline recommendations.”
World ME Day – Sharon speaks to Becky Hotchin at the Western Telegraph
The first ever World ME Day takes place today, Thursday, May 12 and campaigners are calling for the illness to have equal footing with Long Covid in terms of funding, research and recognition.
Pembrokeshire-based Sharon Williams contracted glandular fever at the age of 17, while studying for A Levels and representing Wales at gymnastics. She is now volunteer coordinator for The Welsh Association of ME and CFS Support (WAMES).
Sharon was ill with ME, a post viral, physical and neurological illness, for 20 years but managed to continue to study and then work part time and eventually improved enough to be able to run a successful foreign language school.
After a severe relapse in 2012, her symptoms lessened for a few years but she believes that they have partly worsened since having her Covid jabs.
“Living with a chronic physical illness day in day out for decades is hard, especially knowing that there is no treatment or cure,” said Sharon.
“But suffering with an invisible illness and having people doubt its validity is even harder. ME affects people not only physically with a wide range of unpleasant symptoms, but also emotionally, financially and socially.”
WAMES is proud to be a partner in the World ME Day initiative. It has been campaigning for decades for safe, empathetic and equitable healthcare and says there is a real opportunity now for NHS Wales to end the ‘health and social care crisis’ for the estimated 13,500 people with ME and CFS in Wales.
“For decades people with ME have been unheard, but long Covid has helped to put a spotlight on post-viral illness,” said a WAMES spokesperson.
“There is a woeful lack of investment in ME research across the globe. It is only through research that we can find treatments and one day a cure for ME and related illnesses like long Covid.”
Sharon added: “These are interesting times for the ME community. It is beyond frustrating that those with long Covid are (quite rightly) being believed when they present with post viral fatigue when those with ME have been disbelieved by many for decades, though both are post viral illnesses.
“Doctors who dismissed ME are now realising that post viral illness is in fact very real. There is now government funding into services and research for Long Covid but where is the funding into services and research for ME?
“We have been campaigning and waiting for this for decades. However, I also feel hopeful that because of long Covid, finally ME may be taken seriously.
“We must work together to help all those with post viral illnesses.”
How does this help WAMES?
Shop through Amazon’s charitable website and they will give 0.5% of the net purchase price to the charity of your choice. Support WAMES
Our income has dwindled, so we won’t be able to pay our basic bills after this year.
Our volunteer Jacob spent the weekend setting up a new page and over the next month we will be learning how to use it.
We’re looking on the bright side – this is a new start, with increased features and functions (eventually)! We will continue to provide helpful information for the Welsh ME community – and anyone else who is interested. Please let us know if there is any way we can improve our use of Facebook, or if you can help supply us with relevant up-to-date information. Contact 
On Saturday 28th May, 
The Women’s Health Wales report is a collaborative, co-produced report that outlines 26 areas of healthcare where women, girls, and those assigned female at birth are disproportionately impacted. It includes a range of physical and mental health conditions and issues which might affect this population at different points in their lives and makes a series of recommendations we wish to see implemented to improve their health, lives, and wellbeing – both now and for future generations.
NICE has today,
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